General Principles Of Transition

Transition is defined as "the purposeful, planned movement of adolescents and young adults with chronic illness/disability from child-centered to adult-oriented systems" (3). Successful transition planning is the result of partnerships among the individual, his or her family, school personnel, the health care system, local community and adult service organization representatives, and interested others. The goal is to maximize lifelong functioning, social participation, and human potential. Several general principles of successful transition are summarized below:

1. Transition is a process, not an event. Planning should begin as early as possible on a flexible schedule that recognizes the young person's increasing autonomy and capacity for making choices. Transition to adult services should occur prospectively rather than during a crisis and when the young person's rheumatic disease is under good control.

2. The transition process should begin at diagnosis and include long term sequential planning toward goals of independence and self management.

3. Coordination between health care, educational, vocational, and social service systems is essential. It is particularly important to recognize the complex interplay between health and social outcomes as young people age into employment and, in the United States, into an employment-based health insurance system.

4. As the role of the young person changes in transitioning to adult systems, the families' and the health care professionals' roles also should change. Pediatricians, other health care professionals, and the family should appreciate the young person's change in status as they move from adolescence to adulthood.

5. Self-determination skills should be fostered throughout the transition process. Practice standards for transition services call for a young person-centered and asset-oriented approach that involves young people as decision makers for the entire transition process (3). The key elements of transitional care have been highlighted by policy statements in the United States, Canada, and the United Kingdom (4-10) and are summarized in Table 1.

Table 1 Key Elements of Transition

■ An orientation that is future focused, proactive and flexible

■ An approach that fosters personal and medical interdependence and creative problem solving

■ A written transition policy agreed upon by all members of the multidisciplinary team and target adult services, posted for families and young people to see

■ A key worker identified to attend to the transition needs of the young person

■ Liaison personnel in both the pediatric and adult health-care teams

■ A flexible policy on the timing of events, with the anticipation of change

■ A preparation period for youth and parent

■ An educational program for young people and their families which addresses medical, psychosocial, and educational/vocational aspects of care

■ A written individualized health-care transition plan by age 14, created with the young person and his/her family and updated as needed

■ Identified network of relevant community agencies, adult primary and subspecialty care providers

■ A portable, continuously updated, medical summary

■ Training program for pediatric and adult providers on transition and adolescent issues

■ Provision of appropriate primary preventive care

■ Affordable continuous health insurance coverage

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